Other friends have promised to give or loan me more: Still to come are a bassinet, a baby swing, a bouncer, more clothes, and who knows what other surprises.

Yet this is just a tiny part of the generosity that’s been shared with my husband, my son and me during our two in vitro fertilization (IVF) cycles and subsequent high-risk pregnancy.

My friends watched my son last spring and summer while I underwent two IVF egg retrievals and embryo transfers.

Three friends loaned me maternity clothes, since I gave all of those away too.

A friend cried with me on the sidewalk between our houses when I learned, after my first ultrasound, I was likely losing one of our twin boys, Baby B.

Weeks later, when we found out that Baby B had indeed died, other friends sent e-mails letting me know they were thinking of us—and would help in any way.

When I was hospitalized in mid-January for placenta-previa-related, pre-term bleeding, five friends visited me in the hospital, bringing me goodies—lotion for my super-dry hands, trashy magazines galore, and Coke®, since I’m allowed to have a little bit of caffeine.

In the 6 ½ weeks I’ve been home on bed rest—first full and now partial—friends have brought over dinner and also checked in with me every time they go to the grocery store or Target®, then dropped off and put away my requested purchases.

Friends have come to my house to keep me company when I started to feel too isolated.

They’ve offered to drive me to and from my doctor’s appointments.

During yet-another bleeding scare, a friend took me to the hospital, then stayed with me while my uterus, cervix, baby and I were thoroughly evaluated. She was free to do this because another friend watched her kids specifically so she could be with me.

Friends have taken my son for playdates with their children, so he wouldn’t be house-bound with me too frequently.

One friend has driven my son to every Thursday morning soccer class, while she and another friend switch off hosting post-soccer play- and lunch-dates until afternoon preschool starts.

Two friends, with whom I’ve carpooled the entire school year, now handle all the driving shifts to and from preschool five afternoons a week.

Two friends organized a manicure and pedicure outing for the three of us, driving me to and from the salon.

And so many others have offered to help, from my son’s preschool teacher to acqaintences who’ve heard I’m on bed rest.

It’s been a long, hard year for my family, but our loss and stresses have been tempered by how much support and love we have from our friends.

I strongly believe that love makes a family, and our recent experiences demonstrate that, while we have a nuclear family of five (my husband, my two stepsons, ages 15 and 14, my son, age 5, and me), we are part of a much larger extended family of loyal friends.

Thank you to them all…

My IVF egg retrieval took place August 1, followed by pre-implantation genetic diagnosis (PGD) of my eggs and my husband’s and my embryos, followed by a Day-5 embryo transfer on August 6.  My due date is April 23.

On August 18, the day after my positive pregnancy test, Celine Dion, also age 41, and her husband, Rene Angelil, age 67, announced that Celine was pregnant with their second child via IVF, with a due date of early May.   

I remember thinking that Celine and Rene were making their announcement prematurely, considering my embryos had only been in my body for 12 days, and my due date was at least a week earlier than theirs.  But, I assumed that, because of Rene’s “advanced paternal age,” they’d also done PGD and therefore were comfortable with the viability of the pregnancy, because chromosomal abnormalities are the top reason that either embryos don’t implant at all or, if implanted successfully, die within the first trimester of pregnancy.

Today the Associated Press (AP) released another story, which explains Celine’s and Rene’s super-early pregnancy announcement in August.  The fact that Celine had a positive pregnancy test, confirmed by her IVF doctor, was being leaked to the media, so Celine and Rene felt obligated to respond.

However, according to her U.S.-based publicist, Kim Jakwerth, Celine and Rene found out the very next day, August 19, that embryo implantation hadn’t been successful after all.

Can you imagine being forced to announce your happy news within days of becoming pregnant, then finding out you’d lost your baby the very day after the media explosion?

In the AP story, it states, “[Publicist] Jakwerth said Dion did not immediately announce that she wasn’t pregnant because she was hopeful another implantation would work and had wanted to keep the matter private.”

I’m sure Celine, Rene and their son Rene-Charles also wanted to mourn without the world watching.

Celine’s and Rene’s story demonstrates that, even for the rich and famous, even for those with access to the ultimate in assisted reproductive technologies (ART), success is not guaranteed.  Age does not discriminate when it comes to human reproduction.

Celine and Rene admitted that they had gotten pregnant with an embryo that had been cryopreserved when they were undergoing IVF to conceive Rene-Charles, now 8.  So, Celine was about 33, and Rene was around 59, depending on when they did IVF in relation to their birthdays.

Even at 33, Celine could have had problems with some of her embryos.  Last week, I heard from a 31-year-old who had just completed her first IVF cycle, only to find that none of her eggs are viable. 

And, at 59, Rene’s sperm likely would have created numerous chromosomal abnormalities in his and Celine’s embryos. 

For example, in our first IVF cycle, my husband, once again, age 43, and I, at the tail-end of 40 at that time, had 10 embryos.  Three were chromosomally abnormal because of my eggs, and three were chromosomally abnormal because of my husband’s sperm, so 60% weren’t viable because they either wouldn’t have implanted or would have died in the first trimester. 

Out of our four normal embryos, two simply stopped developing, leaving us with two.  We transferred one girl embryo, who simply didn’t implant.  So, we did PGD and transferred a healthy embryo, but she just didn’t take.  No explanation.  In fact, at our post-IVF consultation, my doctor asked, “Why are you not pregnant?”

During our second IVF cycle, I turned 41, and we created only six embryos, with four deemed chromosomally abnormal—one due to my egg, and three due to my husband’s sperm.  We transferred two healthy boy embryos, they both implanted, but one died in my 8^th week of pregnancy—with no explanation.

My husband and I, not wealthy, were able to afford two cycles of IVF because we are blessed to live in Illinois, one of only 15 U.S. states to have mandatory infertility coverage; we weren’t precluded in any way from receiving coverage, because Illinois doesn’t have the same age and time-trying restrictions imposed by other states; and I cashed out part of my retirement fund to pay for our 20% out-of-pocket for IVF, plus 100% of our uninsured PGD (at $4,000 a try) and 100% of our uninsured cryopreservation of our unused embryo from our first cycle (at $800).

I assume the fact that Celine was hoping to become pregnant again before announcing her prior loss means that she and Rene have had at least one unsuccessful IVF cycle since their mid-August confirmation of her leaked pregnancy test results.

Even if they’ve been able to use embryos cryopreserved more than eight years ago—and even if these embryos  were determined to be chromosomally normal via PGD—not all frozen embryos are viable after they are thawed; even “perfect” embryos sometimes don’t implant; and even chromosomally normal embryos can die in the womb.  Nature has its own rules.

If Celine and Rene have had to create embryos from scratch, they will likely face obstacle upon obstacle trying to conceive with her 41-year-old eggs and his 67-year-old sperm.

The AP article states that the couple is “disappointed but determined.”  I wish them luck. 

I respect how open they’ve been about having to turn to infertility treatments to conceive their son—and to attempt to have a second child.  And, I know how difficult it is to undergo IVF.  Having money doesn’t change the physical and emotional toll of the IVF experience, successful or not, and the devastation of each cycle that ends without a much-wanted baby.

The fact that I am now 16-weeks’ pregnant, and Celine is not pregnant at all, makes me sad.  And, as with anyone who has faced infertility and successfully conceived, I feel guilty when others are unable to get pregnant—or do conceive, then lose their babies.

But, because of Celine’s and Rene’s openness, their loss will teach aspiring parents a valuable lesson.  Even for multi-millionaire songstress Celine Dion, having a child isn’t guaranteed.  Having money and power and fame doesn’t guarantee a miracle.

And, we never hear that story from celebrities:  We never hear, “I tried and failed.”  And, it can happen to any of us.

With no knowledge of my DES exposure, I was unable to protect myself and inadvertently put myself in more danger by taking birth-control pills for more than 20 years to regulate my too-short, 20-day menstrual cycle; by injecting myself with estrogen and wearing estrogen patches for three intrauterine insemination (IUI) cycles in 2004 to combat my DES-induced infertility, resulting from my underdeveloped, one-third-normal-size, T-shaped uterus, complete with uterine lining too thin to support successful embryo implantation; and injecting estrogen for two in vitro fertilization (IVF) cycles this year, once again to overcome my DES-generated infertility.

In short, being bathed in synthetic estrogen while in utero, which puts me at increased risk of breast, uterine, cervical and vaginal cancers, screwed up my reproductive system to the extent that estrogen was recommended in order to normalize my menstrual cycle and enable me to bear children.  And, this extra estrogen has elevated all of my cancer risks. 

Only because of this website and blog, which I started immediately before my second IVF cycle, did I learn that I am a DES Daughter.  My mother has since confirmed that she did take medication for nausea early in her pregnancy.

However, only after receiving the book DES Voices: From Anger to Action from DES Action USA, the nonprofit organization whose mission is “to identify, educate, provide support to, and advocate for DES-exposed individuals, as well as educate health care professionals,” did I learn of danger of not only having taken birth-control pills, but also having undergone infertility treatments involving injectable estrogen. 

But, I received the book on Thursday, August 6, the day of my embryo transfer, so my estrogen injections had been completed a week and a half prior.  Any damage had already been done.   

Since August 6, when I had two male embryos placed into my uterus, then read DES Voices cover to cover, I have been scared that I have vaginal cancer and that, if I were pregnant, my husband and I would be forced to make a decision, depending on the severity of the cancer, about whether and how to pursue treatment based on how it would affect me and our unborn child or children.

On August 17, I received confirmation of my pregnancy.  I was thrilled, but frightened.  I shared my fears with no one, not even my husband, because I didn’t want to worry anyone needlessly. 

On August 26, an ultrasound confirmed that my high levels of Human Chorionic Gonadotropin (HCG), the pregnancy hormone, did signify twins.  Once again, I couldn’t help but be thrilled; the feeling was spontaneous.  But this news also meant that, if I did have cancer, we could put two children, not just one, at risk.

On September 18, I learned, via another ultrasound, that I had lost Baby B a few days beforehand, in his eighth week.  With this devastating news, I, who’d been feeling miraculous after weeks of positive ultrasounds, realized that I am, as we all are, immune to nothing.  Harm, loss, tragedy can forever change any of our lives—at any time.

It wasn’t until September 25, my 10th week of pregnancy, during my first examination at the Center for Maternal and Fetal Health, the local hospital’s high-risk pregnancy group, that I had my first-ever DES Daughter Annual Exam.  It is a special, more-thorough physical and pap smear designed to identify any DES-related abnormalities, particularly clear cell adenocarcinoma—cancer—of the vagina and cervix.  (For the specifics of the Annual Exam of DES Daughters, as recommended by the Department of Health and Human Services’ Centers for Disease Control and Prevention, click onto www.desaction.org, then the DES Daughter tab on the left.)

Because I’d already had an annual pap smear in May, which had shown no pre-cancerous or cancerous cervical tissue, this exam focused on my vagina, where pap smear samples are not usually collected.  And, instead of scraping off just one tissue sample, my doctor gathered four, one from each quadrant.

He also conducted a visual inspection and told me that he thought all of the tissue looked normal.  But, I couldn’t relax until receiving the lab results.

Although I have been blessed in many ways in recent years—meeting my future husband nine days before getting pregnant via donor-sperm insemination, being able to conceive and carry my 4-year-old son, when many DES Daughters remain childless, and getting pregnant, at age 41, during my second IVF attempt, in my life each and every miracle has been countered by tragedy.

I was unlucky in utero, which is an early start.  My DES exposure has negatively affected me since the onset of menstruation at age 13.  I’ve suffered from infertility.  I’ve lost seven unborn children, most recently Baby B, to whom I’d grown extremely attached, having seen him on multiple ultrasounds. 

So, with my history, I could imagine being pregnant at age 41, filled with such joy, then finding out that I have cancer.

But, my pap smear results came in while we were on vacation last week, so I now have physical proof in my hands, a lab report that definitively states, “Negative for intraepithelial lesion/malignancy.”

While my uterine abnormality still makes my pregnancy high-risk, I’ve already proved that I can carry a very large child to term, to the full 40 weeks of pregnancy.  My son was a whopping 9 pounds, 7 ounces when he was born on his due date.

So, yes, I am a DES Daughter, which has created life-long problems for me—and will continue to haunt me.  I can’t change the decisions I made before knowing my DES Daughter status.  But, now that I am informed and educated, I will protect myself vigilantly.

And, today, I’m 41, in the second trimester of my pregnancy, and cancer-free.

I have hated driving to downtown Chicago over and over, always having to give myself 90 minutes of travel time, because of varying, unable-to-be-estimated traffic patterns.  My appointments have sometimes lasted a mere two minutes, the time necessary for a blood test, after which I’d climb back into my car to start the long drive home to the suburbs.

I have hated being repeatedly stuck in alternate veins located on my inner arms, opposite my elbows, for these blood draws.

I have hated having my legs in stirrups for countless vaginal ultrasounds to check the growth of my follicles and the thickness of my uterine lining. 

I have hated the dozens of injections that I’ve had to give myself in my stomach, my thigh and my backside, their resulting bruising, soreness, bloating, headaches, exhaustion and other side effects.

I have hated twice having a needle inserted through my vaginal walls to retrieve my eggs from my ovaries.

I have hated the three-times-daily Endometrin® vaginal progesterone suppositories, necessary when ovaries are unable to sustain a pregnancy with their own progesterone production because they were punctured full of holes during the egg retrievals.  The cottage-cheesy vaginal discharge is repulsive.

I have hated the emotional impact of undergoing treatment for infertility, the need to have hope to make it through the process, yet the constant underlying fear of failure, the fear of how I would possibly move forward if I failed.  Not to mention the feeling that failure would somehow be my fault.

I have hated having to dip into my retirement account for the money to pay for our out-of-pocket costs for our two IVF cycles.

I have hated the “you’re-not-pregnant” phone call.

But I loved the two embryo transfers, seeing our babies flickering across the ultrasound screen like shooting stars, as they were released from the catheter and entered my uterus.

I loved the congratulations phone call, confirming my pregnancy.

I’ve loved the three ultrasounds since, when I get to see my little guys, their gestational sacs, their tiny pulsing hearts, their growth.

During yesterday’s ultrasound, my cervix was closed, which the IVF coordinator said is “very good.”  She found Baby A first, and she deemed his heartbeat and yolk sac as “good.”  She said the same about Baby B’s heartbeat and yolk sac. 

She noted that I still have some separation in my uterine lining between the two gestational sacs, diagnosed last week as one of two subchorionic uterine hemorrhages, but, because I’m no longer spotting, “It’s alright.”

Yesterday was the first that she’d mentioned the twins’ yolk sacs, so I asked exactly what they are.  She said that each yolk sac “provides nutrition for the embryo before the placenta takes over.  They provide the blood supply and nutrition to each fetus.  Once the placenta takes over, the yolk sacs will shrink gradually.” 

Near the end of the ultrasound, my doctor stepped in.  He declared, “What we have is not 100% success.  It’s 200% success.” 

The IVF coordinator led him through the ultrasound results for each baby, then he told me to get dressed, then we’d talk in his office.

As she finished up, the IVF coordinator handed me my first ultrasound picture featuring both babies at once, which I held as I walked into my doctor’s office. 

Our Twins: Baby B (left) and Baby A (right)

As I sat down, I showed him the ultrasound scan, then asked if he’s worried that Baby A’s gestational sac is so much bigger than Baby B’s.  He said no, that what is most important is the size and growth of each embryo and the strength of each baby’s heartbeat, all of which are on track for their gestational age.

I asked him for the exact measurements of each, which were 11.1mm for Baby A and 9.9mm for Baby B.   But the clinic’s ultrasound machine, which he described as one of the best available, has a standard of error of +/- 1mm to 2mm.  With an only 1.2mm difference in measurement between Babies A and B, the reality is that no difference in size may exist. 

He went through my chart, telling me that, for the purposes of calculating my due date, the first day of my last period must be listed as July 17, even though I really got my period in the afternoon on July 18, therefore July 19 was the official first full day of my menstrual cycle.  He explained that, because my cycle was manipulated, because my IVF egg-retrieval was August 1, the first day of my last period must be determined as July 17, regardless of reality, which makes my due date April 23. 

“No one can change these dates,” he said.  He wrote them on his business card and handed it to me.  “When you’re asked for these dates, you give these.”

He told me I can stop taking my once-daily dose of baby aspirin, can reduce my progesterone-oil injections from two to one a day, and can stop both the progesterone-oil injections and vaginal progesterone suppositories on September 26, when I hit my 10^th week of pregnancy.

I thanked him for getting me pregnant, and he said, “I told you it would work.”

He was always so positive, even after the first failed cycle, which I had assumed was his attempt to keep my spirits up, knowing that depression doesn’t faciliate success.

Even though the majority of my experiences with the IVF clinic and its staff were negative, the doctor and nurses, the genetic counselor and the reception staff were all wonderful to me.  The torturous treatments they prescribed and conducted were simply necessary to achieve pregnancy in a 41-year-old woman with a uterine abnormality.  Yes, that 41-year-old, six years into advanced maternal age, with an arcuate uterus, is me.

So, although I was so relieved that yesterday was my final appointment, my close-out ultrasound and consultation, I felt sad because of all of the emotions I have experienced at the clinic, with my doctor and nurses, and because I am so grateful to every member of the staff  for helping me become pregnant.

As my doctor escorted me to his office door after our closing consultation, I wanted to hug him, but I barely know him, and our relationship is purely a professional one, even though his profession involves major emotions.  So, I just shook his hand, not wanting to make him uncomfortable.

He told me to come back to visit, to show the staff the babies. 

And, I’ve already decided that I will hug him then.  I will hug every single one of them then.

Then he read the post and laughed that I referred to my vagina as “fully operational.”

A few minutes later, he asked, “What are you going to blog about today?”

“How DES has personally affected me.”

“It’s starting to personally affect me,” he muttered.

I reminded him that he never noticed anything wrong with my vagina, so it’s not like my abnormality made him recoil in horror.  Its unique shape, apparently, is only recognized by medical professionals. Further, I dated a doctor years ago, and, though I never slept with him, he did see my vagina, and he didn’t mention a thing.  Maybe he was being polite.  Or maybe, as an urologist, he didn’t have training in the vaginal area.

Anyway, I told my husband that today I would clarify that he didn’t marry someone whose vagina is freakish to the lay observer.  In fact, none of my partners has ever said a word.  And, even my doctors haven’t been alarmed at the sight of it. 

So, hopefully, I’ve now tiptoed back from that line he thought I’d crossed.  I just never considered that my vagina would reflect on him negatively.  After all, doesn’t him accepting me, with all of my imperfections, demonstrate that he’s an exceptionally good guy?  He married me, complete with T-shaped uterus and abnormal vagina, plus he adopted my anonymous-sperm-donor-conceived son. 

I will write more about how DES has affected me tomorrow because I have an unbelievable headache today.  Last IVF cycle, starting a few days after my embryo transfer, I had a headache for six straight days, until I, unfortunately, got my period.  Because the only new medication I take post-transfer is Endometrin®, a three-times-daily vaginal progesterone suppository designed to keep my uterine lining thick, I re-read the patient information pamphlet, and 3% of women get headaches as a result.  Lucky, lucky me…

I launched this website on Monday, July 13, and, the following week, I searched the Internet to see if my site popped up when I input varying search terms, related to my content.  The first I typed in was “T-shaped uterus.”  While scrolling down page after page, I didn’t find my site; however, I did come across the website of DES Action USA, a nonprofit organization that provides support, information and advocacy for individuals affected by exposure to the synthetic estrogen drug diethylstilbestrol (DES).  The website is www.desaction.org.

Under the tab DES Daughters, defined as “women whose mothers were given DES while pregnant with them,” the following risks are listed:  clear cell adenocarcinoma—cancer—of the vagina and cervix; breast cancer; structural changes of the reproductive tract, including the vagina, cervix, uterus, fallopian tubes and ovaries; having a T-shaped uterus, which increases the likelihood of incompetent cervix, which can result in pregnancy loss and pre-term delivery; infertility; ectopic pregnancy; preeclampsia; endometriosis; uterine fibroids; paraovarian cysts; and early menopause.

When I was 20, I saw a new gynecologist who took one look at my private parts, then asked if my mother had any trouble getting pregnant.  I said no, that I was conceived three months after my parents were married.  She said that my vagina was “different from everyone else’s” and that it could be a result of my mother having taken medication while she was pregnant with me.  I discounted it, because my mother hadn’t had trouble conceiving and because the doctor never mentioned any other risks that I should be aware of.  And, I had the self-esteem of a garden slug at the time, so I lacked the confidence to advocate for myself, to ask questions.  I didn’t even have the nerve to ask her what was wrong with my vagina, what about it was “different from everyone else’s.”  I waited a whole year, paranoid, wondering in what way or ways my vagina was freakish, until my next annual exam, where I finally asked specifically what was wrong.  She explained that I have an extra flap of skin, but not to worry about it.  She said that just like people have different shaped noses, all of which serve their function, my misshapen vagina, while “different,” was fully operational.

Fifteen years later, after not successfully conceiving during four IUIs, my doctor performed the HSG that showed my T-shaped uterus, one-third normal size, because, as she explained, it never developed fully while I was in utero.  When I researched the T-shaped uterus and its ramifications online, I found a website that said that .01% of women have uterine abnormalities, and there are seven different kinds, one of which is the T-shaped variety.  And, my doctor told me that I had the only kind that “can’t be fixed.”

So, not only did I have the extraordinarily rare T-shaped uterus, but also the double whammy of abnormal vagina and underdeveloped uterus.  (Because my son stretched out my uterus during his nine months in it, my uterus is no longer T-shaped, but now arcuate.  In short, it’s still small and abnormally shaped, but now less so.)

The DES Action website information made me pretty confident that I am a DES Daughter, but what was most upsetting to me was the revelation that DES exposure can affect the third generation, as in my four-year-old son and my future son(s), if this IVF cycle is successful.  (I had two boy embryos transferred into my uterus last Thursday, August 6.)  Eager to gather as much information as I could, I immediately mailed an order form and check to DES Action for the book DES Voices: From Anger to Action.

A few days later, DES Action’s Executive Director Fran Howell e-mailed me, offering to put together a packet of information, if I would let her know of any specific DES interests and needs.

I responded, “I believe I was exposed to DES because I have a T-shaped uterus and abnormally shaped vagina.  My mother has no memory of taking anything during her pregnancy, and I’ll be 41 tomorrow, so medical records likely don’t exist anymore.  But, I have a 4-year-old son and am going through IVF trying to have another child, and the information on your site is the first I’ve ever seen of DES exposure affecting grandchildren.  So, anything you can send about DES infertility, cancers and DES grandchild issues would be great. Thanks much.”

She replied, “First, it is highly unlikely you’d be able to get your mother’s medical records. I am not kidding when I tell you how many ‘fires and floods’ afflicted medical offices when DES Daughters requested records.  There is no real marker for DES exposure.  A T-shaped uterus is the closest there is. That abnormal shape does not appear in nature and was not documented as occurring before DES was given to pregnant women. Not all DES Daughters have it, but those who do are considered to be DES Daughters. (Dose and timing of exposure affect what problems were caused by the drug).”

I received Fran’s packet of information a few days later and was disturbed by a newsletter article about the link between Clomid® and uterine cancer.  I took Clomid during two of my IUI cycles. 

I reacted to an article titled, “DES Daughters at Increased Breast Cancer Risk after Age 40,” by scheduling a mammogram two days prior to my embryo transfer, knowing that, if I’m pregnant, I can’t be exposed to radiation for nine months. (I got my mammogram results yesterday, and they were normal, thank God.)

I received the book, DES Voices, the day of my IVF embryo transfer, a day I was supposed to rest, and I’d finished it by 4 a.m. the following morning.  In the past few days, I’ve also read three other books about DES and the results of exposure to it.   The most recent, just released, is what i thought i knew, a fantastic memoir by Alice Eve Cohen.

What I’ve learned is that U.S. companies didn’t adequately study the synthetic estrogen DES, which was created in 1938, and the research that was done showed cancer and reproductive abnormalities in mice and other animals.  Yet hundreds of companies distributed DES under hundreds of different brand names until it was “contraindicated for use in pregnant patients” in the United States in 1972.  It was used elsewhere even in the 1980s. 

DES was considered a wonder drug, even though no research backed up those claims.  It was given to women who had prior miscarriages.  It was given to women with no pregnancy problems, so that they would have “big, healthy babies.”  It was put into prenatal vitamins, making women unaware they were taking DES at all. 

It didn’t prevent miscarriage.  It provided no benefits to pregnant women or their offspring whatsoever.  What it did do is increase the breast cancer risk of the women who took it by 30%.  It passed through the placenta into these mothers’ sons and daughters, forever changing the development of their bodies, creating numerous abnormalities that have resulted in shame, infertility, cancer, and death. 

I am a DES Daughter.  And, I will do everything I can to protect myself; my mother; the two of my four brothers who may have been exposed; my nephew and nieces who might be DES grandchildren; my son, a DES grandson; and my future son(s), if I am pregnant now.  (My pregnancy test is next Monday, August 17.)

To learn more about DES, you can click on the links for DES Action USA, The DES Cancer Network, and the Centers for Disease Prevention and Control’s DES Update, all of which are listed on the right side of this Home Page, under DES Links.

NOTE:  This post was reviewed for accuracy by Fran Howell, Executive Director of DES Action USA.  My sincere thanks to Fran.

Donna had promised that when she received the final pre-implantation genetic diagnosis (PGD) results about our embryos when she arrived for work, she would direct the embryologist to thaw our little guy out in time for the 10:15 a.m. embryo transfer, if we needed him. 

I left at 9 a.m. for my 9:45 a.m. appointment with Donna and 10:15 a.m. embryo transfer and faced the worst traffic I’ve ever experienced driving to the IVF clinic.  I knew I was going to be late for my appointments, of all days, when the IVF clinic runs like clockwork, when I’ve never been late, not for a consultation nor blood test nor ultrasound. 

I started doing deep-breathing, worried that the embryo or embryos transferred into me wouldn’t want to stay in my stressed-out uterus. 

“Breathe in through your nose, out through your mouth,” I repeated to myself, feeling slightly Zen.

I arrived only five minutes late, parked my car, rushed into the clinic, and signed in, telling Sue, the receptionist, to let the genetic counselor know I was there.  I started drinking the cranberry juice I’d brought with me because I was directed to have a full bladder for the embryo transfer, all the better to see my uterus by ultrasound, so my reproductive endocrinologist would be able to expertly guide the catheter into it, then release the embryo or embryos inside.

Sue said that the genetic counselor was on the phone, so she’d try her back in a few minutes.  She called her again, with no luck, then paged her: “Donna, dial XXXX.”  Still nothing.

I’d arrived late, at 9:50 a.m., and I needed to meet with Donna to learn about the pre-implantation genetic diagnosis (PGD) testing of our embryos before my 10:15 a.m. embryo transfer.  It was now 10 a.m.  I’d drunk a lot of cranberry juice, and I was nervous, so I had to urinate desperately.  My cell phone rang, and it was my husband, on an out-of-town business trip, wondering why I hadn’t called him yet to consult with him about our embryos, if any decisions needed to be made.  I quietly told him that I was in the reception area, waiting for Donna, and I’d call him as soon as I was in with her.

At this point, any “Zen-ness” was gone.  All I could think is, “Where in the fuck is Donna?”

I heard a stairwell door open, saw Donna walk by and into the back office area.  It took every ounce of strength I had to let her pass me without calling out to her. 

I waited. 

I decided I absolutely had to pee. 

I did. 

Then she opened the door to the reception area and, smiling, called to me.

“We have good news,” she said.  She explained that we had two chromosomally normal embryos, so we didn’t need to unfreeze our extra embryo from our first cycle.  We walked into an office, sat down, called my husband, and put him on speaker phone.  She handed me a copy of the PGD results for our six embryos, then explained to my husband that we had two strong embryos ready for the transfer.

I looked down at the paper, registering that both embryos are male.  “They’re both boys, sweetie.  Is that OK?” I asked.

My sweet husband, biological father of two sons from his first marriage and adoptive father of my son, thinks it would be nice to have a daughter.  He even has a name picked out:  Emma Katherine.  But he said, “Of course.  The health is the most important thing.” 

Donna then explained what was wrong with our other four embryos.  (I’ll explain the PGD process and results in detail in a future post.)  Two had chromosomal abnormalities that made them so incompatible with life that they never would have implanted.  One could have implanted, but would have miscarried early on.  And, one was Trisomy 18, an embryo with an extra chromosome that could have gone to term, a baby that likely would have lived only days, if at all.  After finishing the consultation, I told my husband I’d call him after the transfer was over, and Donna directed me back to the waiting room.

It was 10:25 a.m., and I hadn’t even been brought back to the surgical area for preparation, so I called my friend Bridget to ask her to pick my son up from camp at 11:45 a.m., if I couldn’t make it. Worried that I had peed too much out of me, I started drinking water from a bottle provided by the clinic.  Feeling less stressed because I had back-up for my son, via iPhone I sent a couple of e-mail messages to friends who’d sent me good-luck messages, letting them know that we had two little guys to transfer.

Finally, I was called in.  After stripping down my bottom half and putting on a hospital gown, the ultrasound technician came in and asked, “How is your bladder?”

“I can hold it.”

“’I can hold it’ is not a criteria.  Let me check.”  She did a quick ultrasound of my bladder, saying, “That is impressive.  You did good.”

But then she told me to urinate—to two-thirds of the cup provided in the bathroom—because I’d have to wait about five minutes for the reproductive endocrinologist, then we’d talk, then have to sign the papers authorizing the transfer of two embryos, #2 and #6.

Having to pee that desperately, then only being able to release part of it, was torture.  But I did it, and, after the initial discomfort, I did feel better.

My doctor arrived, then confirmed that we had two healthy embryos, “but unfortunately nothing to freeze.”  He said that we had two high-quality embryos, so I have a good chance of getting pregnant.  He then added that I have about a 20% chance of having twins.  This last statement shocked me because he’d said in my original consult that, if we transferred two chromosomally normal embryos, I’d have a 20-30% chance of having one baby.  But I didn’t question him.  I was too nervous.

The embryologist came in and asked my name, wanting to make sure I received the right embryos.  I appreciate all of the safeguards.  She wished me good luck.

Then, with my feet in stirrups, and my legs spread, I was put practically upside down.  My doctor put the speculum inside of me, while the ultrasound technician adjusted the ultrasound monitor next to my head, so I would be able to see the transfer.  She showed me my uterus, the straight line that was the catheter inside of it, and told me to watch the end of the catheter for what would look like shooting stars—our babies being released into my uterus.

My doctor described the entire procedure, and when I saw the shooting stars, I started crying.  I was crying with relief that we had two embryos, when I feared we’d have none from this cycle.  I was crying because I wished I wasn’t alone, that my husband could have shared this experience with me, as he had the last time.  I was crying because this was the culmination of a very medicated, very emotional second IVF cycle.  I was crying because I want to have hope, but I’m afraid to.  I was crying because I do have hope that this time will work, but then I’m worried that I’m being delusional.  And, I was crying because IVF and PGD are miracles that make it possible for someone like me, a 41-year-old with a uterine abnormality, to have a child.

My doctor stood up and patted my shoulder, telling me it was OK. 

“I’m sorry,” I said.  “I was just so nervous because I didn’t have as many eggs this time.”

He patted me some more, then, concerned that I was alone, considering my fragile mental state, asked how far I had to drive.

“About 45 minutes.”

“Well, maybe you should stop for coffee beforehand.  Then rest for the day.”

As he walked out, he added, “Decaffeinated coffee.”

From Zen-like calm to emotional basketcase, in just three hours.  Welcome to the roller-coaster world of infertility treatments.

Our medical insurance Benefits Handbook states, “Infertility treatments are covered as follows:

–assisted reproduction procedures (including facility charges and related expenses) due to infertility.

–ovulation induction and monitoring up to a maximum of six attempts per lifetime.

–artificial reproductive technology (ART) – limited to a combined maximum of three attempts per lifetime for the following: in vitro fertilization, gamete intrafallopian transfer (GIFT), zygote intrafallopian transfer (ZIFT).”

When 19 eggs were retrieved from me in June, I naively hoped that I’d never have to go through the process of injecting myself with ovulatory-stimulating medications again.  After all, for our three insured IVF cycles, we’d only need four embryos, since our reproductive endocrinologist will not transfer more than two Day 5 embryos, and my husband and I had decided in advance that we would transfer only one for our first and second cycles, resorting to transferring two for our final attempt.

Then we went in on June 10 for our first embryo transfer, and the genetic counselor shocked me by greeting us with, “Well, we will have a transfer today.”  She then broke the news, which she felt was good news for aspiring parents “our age,” that we had only two healthy embryos.  The math is as follows:

19 eggs retrieved from my 40-year-old ovaries

-8 eggs that were not mature enough to fertilize

-1 egg that didn’t fertilize

-3 eggs that were chromosomally abnormal due to my “advanced maternal age”

-3 embryos that were abnormal due to my 43-year-old husband’s “advanced paternal age,” a term I’m making up

-2 embryos that were healthy, but stopped developing

= 2 healthy embryos

We stuck to our original decision and implanted the embryo recommended by the genetic counselor as “our strongest embryo”—a little girl—because we had to make an immediate decision about how many embryos to transfer, based on this new information; because a hysterosonogram had revealed that my formerly T-shaped uterus is now a slightly larger arcuate uterus, making implantation more likely; because my uterine lining was thicker than it had ever been, also making implantation more likely; because we had chromosomally normal embryos, eliminating the majority of first-trimester miscarriage risks; because my husband is terrified of having multiples; and because I was an idiot who didn’t put two-and-two together.

To explain the idiocy, when I met with the genetic counselor in March, I had asked her how, when conducting pre-implantation genetic diagnosis (PGD), embryologists could just take one cell away from an eight-cell embryo without doing any damage.  She had explained that, within the eight-cell embryo, each cell is identical, and embryologists know that, because the eight-cell stage is the point at which one embryo will divide into identical twins, it only takes four of those eight identical cells to create a perfectly normal, healthy person.  Somehow I never connected this mind-relieving information—that our embryos would have already split before implantation—to my husband’s and my conversations about transferring two embryos, imagining them dividing into two separate sets of triplets, making me the next best thing to the “Octomom.”

So, we had our one embryo transferred and cryopreserved our second embryo, a little boy, but, although everything was as perfect as it could have been for a 43-year-old man and his nearly 41-year-old wife, complete with uterine abnormality, our baby girl didn’t implant.

The day that I got my period, I decided that transferring only one embryo had been ridiculously stupid, so we needed to transfer two the next round.  My sweet husband said OK. 

But, with only six embryos this time, we could end up with no new embryos to add to our frozen-boy embryo for this transfer.  So, I called our insurer yesterday to clarify that we have coverage for six ovulation inductions.  I explained in detail that I’d already been through the egg retrieval and was worried that we may not have any viable embryos tomorrow.  I asked him if what I’ve done to date counts as ovulation induction or IVF.  He said that it is ovulation induction, we do have coverage for six, and we also have coverage for three cycles of “artificial reproductive technology.”  I was so relieved, because this meant that, if our little frozen guy is all we’ve got tomorrow, I don’t have to do a transfer.  I can stimulate four more times, trying to have two embryos for the next two transfers. 

But, I couldn’t stop thinking about my conversation with this insurance man.  I couldn’t stop thinking that he didn’t know what he was talking about, that he didn’t understand the terms he was using.  Why would the bulk—95%—of an IVF cycle be only “ovulation induction”?  The embryo transfer itself is a two-minute, pain-free procedure.  This two-minute procedure is the deal breaker?  So, I called back, this time speaking to a woman who had the good sense to know that she shouldn’t discuss issues she didn’t understand, and she referred me directly to the infertility department, which was closed for the night.

I called this morning, and the term, “ovulation induction,” as the insurer uses it, refers only to the procedure as it relates to artificial insemination.  Once my eggs were retrieved on Saturday, we were locked into our second IVF cycle, and we only have coverage for three.  So, tomorrow, we will have a transfer.

As of this morning, when only the results of the first wave of PGD were available, we were down to five embryos, because one of my eggs was chromosomally abnormal. 

In her message, the genetic counselor also said that she believed that the majority of our embryos made it to yesterday, which was Day 3.  Today, the second stage of PGD was conducted, and results will be in for tomorrow’s 9:45 a.m. appointment with the counselor.  My husband is on a business trip today and tomorrow, but, when he called an hour ago, he had me laughing hysterically about his new-business pitch tomorrow.

“What?  You want to talk business?  I’m sitting here, meeting with you, in Dayton, Ohio, while simultaneously impregnating my wife in Chicago.  What more do you need to know?” 

Tomorrow morning, I’ll call my husband, so we can discuss our PGD results, and make our final decision about the embryo transfer. 

Tonight, I’m going to bed praying that my husband will get me pregnant while he’s out of town.  We’d get a lifetime of mileage out of that story.

When I talked to Adam at 11:15 yesterday morning, he said, “Come on over.”

“When are visiting hours?” I asked. He said until 7 p.m.

I explained that I had to pick up my son from camp at 11:45 a.m., then was watching my son’s friend starting at 1:15 p.m., for a couple of hours, then needed to take my son to his soccer camp from 4:15 to 5:15 p.m.

“I will definitely be there,” I said, but explained that I might have to wait until my husband got home from work at 6 p.m.

I couldn’t wait that long.

I retrieved my son from camp and rushed over to the hospital, eager to have at least 45 minutes with Jessica and her baby girl before I needed to be home.

After telling me about her labor-and-delivery ordeal, Jessica, sweet as a person can be, asked about me, about how the egg-retrieval went on Saturday. I told her that this IVF cycle has been so debilitating that I’ve been thinking that, when I go in on Thursday for my embryo transfer, if there aren’t any viable embryos from this attempt, if there is only our frozen little boy from our first cycle to transfer, I will choose to transfer just him, even though transferring one embryo will halve our chances of having a child—and even though our insurance will cover six ovulation inductions, so I could stimulate my ovaries four more times, trying to get two embryos for a second transfer, then two more embryos for my third and final transfer, making our chances the best they can possibly be. I had discussed this with my husband, and he’d agreed.

But then I walked into the hospital room and saw her tiny, sweet, sleeping face and her adorable little toes. I saw how gentle my son was with her, carefully petting her feet and her knee.

So I told Jessica that I’d changed my mind about just transferring one embryo, about giving in to two weeks of IVF-medication hell, about reducing our chances of having a baby and of my son having a sibling. I explained that, now that I’d seen her daughter, I’d decided that, if I have to stimulate again, I’ll stimulate again.

Her eyes welled up, and she said, “I know. After she was born, one of the first things I said was, ‘Oh, M.K. wants a girl.’”

Then she was teary-eyed, and I was bleary-eyed, two hormonal women, one having just given birth and the other desperately wanting to be in her shoes in nine months.

I feel guilty that one of Jessica’s first thoughts, after learning that she had a healthy, perfect, 10-fingered, 10-toed baby girl, was of sadness for me because my husband and I had a baby-girl embryo transferred into me on June 10, but she wasn’t meant to be. I wish that Jessica would have been self-centered, baby-centered and family-centered, for days upon days after delivery, before thinking about me and my infertility.

Some infertile women become jealous. I admit to staring longingly at babies. I admit to getting emotional around them when on IVF meds. I admit to having felt bitter that 16-year-old crack addicts can get pregnant over and over, but I can’t. But I have always, always been happy when the people I love, my family members and my friends, have babies.

Because Adam, Jessica and their almost-four-year-old son were a family of three, while my husband, my son and I are, most often, a family of three, we spend a lot of time together—a mom-and-tot preschool class last year, the boys’ first Cubs game, swim lessons, gymnastics classes, and mom-and-kid playdates. For a while, their son made Jessica pretend she was me on a regular basis, as in, “Mom, be M.K. when you read me this book.” He also pretended that my son and I were often with them, experiencing various other events.

We’re like family, both real and imaginary. So, in this case, I feel such intense happiness that Adam and Jessica and their son, who has grown up with my four-year-old son, have this daughter and sister to love. And, I know that they will share her with me, my husband and our son.  And, because they are that sweet and generous, I can’t stop crying…

The following are the costs associated with my husband’s and my first IVF cycle.  Please note that, under each service, I’ve listed three amounts:

• The first was the charge submitted by our IVF clinic to our insurer;
• The second is the “Agreed Pricing,” the discounted pricing our IVF clinic has with our insurer, which benefits us because it reduces the 20% for which we are responsible;
• The third was our out-of-pocket cost, which is 20% of the Agreed Pricing.         

COSTS OF ONE UNSUCCESSFUL IVF CYCLE

Medications (2 months of cycle only): $7,477.95, $7,477.95, $371.08

Initial Consultation: $194.00, $132.04, $26.41

Initial Lab Tests (Me): $1,227.45, $782.60, $145.74

Initial Lab Tests/Semen Analysis (Husband): $874.00, $210.29, $42.06

Physical/Pap Smear (Me): $491.50, $263.07, $19.27

Ultrasound/Blood Tests #1: $1,107.00, $371.19, $67.24

Hysterosonogram of Uterus: $1,379.00, $662.95, $47.79

Ultrasound/Blood Tests #2: $654.00, $221.61, $44.15

Ultrasound/Blood Tests #3: $506.00, $222.39, $37.48

Ultrasound/Blood Tests #4: $506.00, $222.39, $37.48

Ultrasound/Blood Tests #5: $506.00, $222.39, $37.48

Egg Retrieval: $6,891.00, $5,056.00, $1,102.20                       

Anesthesia for Egg Retrieval: $1,045.08, $1,045.08, $209.02

Pre-Implantation Genetic Diagnosis (PGD): $4,000.00, $4,000.00, $4,000.00

Embryo Transfer: $1,669.00, $750.00, $150.00

Cryopreservation of our one embryo: $800.00, $800.00, $800.00

Final Blood Tests/Pregnancy Test: $311.00, $131.64, $19.33                  

TOTAL of Charges Submitted: $29,608.98

TOTAL of Agreed Pricing: $22,571.59                          

TOTAL of Our Cost: $7,156.73

Because of my husband’s and my ages (43 and almost 41, respectively), we have opted to do pre-implantation genetic diagnosis (PGD) because we have only three IVF attempts covered by our insurance; it is difficult for an embryo to implant in my uterus due to my uterine abnormality; and chromosomal abnormalities result in both failed implantation and first-trimester miscarriages.  So, we are incurring a $4,000 cost that many others may not require; however, even subtracting $4,000 from these totals, you can see how cost-prohibitive IVF is for everyone, uninsured and insured.

I’ll write more on this subject in my next post.